Tom’s Story

by Sue Perry

Tom was born a perfectly normal beautiful baby on 7th December 1993. For 5 months he developed in the same way as any other baby, and then he had a massive seizure lasting 40 minutes and was unconscious for 9 hours, we thought we were going to lose him. After that he had regular seizures every few weeks but was put on medication and continued to develop normally.

Tom started school at Staplehurst Primary School in the September before his 5th birthday and was doing well until he was 5 1/2 when his medication stopped working. For the next two years we went through a nightmare time while his consultant at Guys Hospital tried to get his epilepsy under control. We discovered that Tom was, and still is, very sensitive to medication changes. Each new medication would either not work at all, would work for a short period of time and then stop having any effect, or would make his seizures worse.

We would regularly do emergency dashes up to Guys Hospital after he had approximately 24 seizures, often before midnight after he’d gone to bed at 7ish, then I would stay in hospital with him, usually for several weeks at a time while they tried to stop his seizures and my husband would come to the hospital each day after work, it was a dreadful time.

My other two children were thankfully older, my son Chris was 15 and my daughter Kate 17, unfortunately Tom had to be our main focus, which was hard on them. This pattern of events went on for the next two years until eventually Tom was under reasonable control with a maximum of 7 seizures a night and taking 7 different medications. Unfortunately by the time he was ready to go back to school he had learning difficulties with behavioural problems, so Staplehurst School was no longer suitable for him and he was given a place at Bower Grove Special School in Maidstone.

Screen Shot 2014-10-06 at 4.08.39 PM

He happily stayed at Bower Grove until he was 14 when they could no longer meet his challenging needs. It was then suggested to us that it would be in his best interests to go to residential school. This was the hardest decision my husband and I have ever had to make. We didn’t want anyone else looking after our little boy, or to have to trust anyone else to look after him, but we did it, and he went to a school that specializes in severe epilepsy called Young Epilepsy. He has now completed 4 years in the Young Epilepsy School and is in his second year in their college where he is learning valuable life skills. It has been really good for Tom, allowing him to mature and to learn to be as independent as he can be. He can now get himself dressed, clean his own teeth and is learning to wash his hair himself.

Tom will never be able to be independent as we know it. He will always need a high level of medical care as he still has seizures most nights, sometimes 6, and is at high risk of dying in his sleep due to a condition called SUDEP (sudden unexplained death in epilepsy). He will have to live in residential care for the rest of his life with 1-1 care for his safety during seizures and also due to his unpredictable behaviour; he can get quite angry at times.

At 15 Tom was diagnosed with Dravet syndrome a genetic condition which causes severe epilepsy. This is a fairly new condition discovered by Charlotte Dravet. There is (as yet) no cure, and no one really knows what the life expectancy is. One in 40,000 children has this condition and they all have similar stories to ours, some have died through this horrible condition, which is why my husband and I researched and developed Pulseguard.

Pulseguard is a new heart rate monitoring system, which will trigger an alarm if Tom’s heart rate rises above the perimeter that we set it at, Tom’s heart rate always rises when he has a seizure. But also it will set off an alarm if Tom’s heart rate drops so that we can get to Tom fast and try to prevent SUDEP. We want to safeguard Tom as best we can. Due to the success of PulseGuard for Tom we are now ready to share it with other families that are in a similar position to Tom.

About Pulseguard

Screen Shot 2014-10-06 at 4.08.49 PM

Pulseguard is a system developed by a family for their son Tom, who has severe epilepsy. It is unlike any other system on the market, in the fact that it monitors and detects any rise and fall in the heart rate and if the heart rate goes outside the parameters you set, an alarm is triggered.

PulseGuard TM was inspired by Adrian and Sue Perry one morning in 2012 whilst reviewing the previous night’s video footage of Tom’s seizure activity.

Tom suffers from Dravet Syndrome and generally only has his seizures whilst he is asleep; Sue and Adrian have a seizure alarm under Tom’s mattress that detects movements during a tonic clonic seizure and an audible monitor to detect any gasps or noises during a seizure. They also have a CCTV camera above his bed head that activates recording during any movement so that they can review the previous night’s seizures, if any.

It was during the playback, they discovered that they had missed quite a prolonged seizure that occurred during the night where Tom’s movements were not enough to activate the under mattress alarm and he had his face buried in his pillow so no noise was picked up.

After seeing this they were very concerned, because Tom is at high risk of SUDEP (sudden unexplained death in Epilepsy) and needs to be monitored carefully. They realized they required a better system that would safeguard Tom. So they started to research further to see if a better alarm system existed that would give a warning if the same situation ever arose again.

After a great deal of research they discovered that there was no system on the market that could accurately detect the onset of a seizure in Tom so they decided to try and design their own.

They looked for one constant condition that existed when Tom had any kind of seizure and they remembered from a previous conversation with Tom’s consultant after he had had a telemetry EEG, where she explained that when Tom had a seizure his heart rate increased dramatically and was like that of running a marathon.

When Sue and Adrian couldn’t find a monitor to suit Toms needs, they decided to try and create a system that would detect Tom’s heart rate and transmit it wirelessly to a device that would monitor and provide an alarm if Tom’s heart rate increased or decreased, so that they would not only be alerted if Tom was having a seizure but also be given peace of mind in early detection of SUDEP (sudden unexpected death in epilepsy).

At this point they started to develop an app for Apple with the help from an American Neuro – Scientist, who was interested in the project and wanted to help in developing Pulseguard.

Later in the project, their son Chris came on board (an IT Engineer) who took over the final modifications to the App and their daughter Kate an (Emergency Medical Technician in the Ambulance Service) also came on board to help with the research and development and complete the family team that makes up Adris today.

After extensive research we settled on the current sensor device that straps to Toms Ankle or wrist and works by shining a light in to his skin that monitors the blood flow through the capillaries giving an extremely accurate heart rate indication which is then sent to the iPad app via Bluetooth technology.

Screen Shot 2014-10-06 at 4.08.29 PM

After discovering that PulseGuard had successfully alerted on every one of Tom’s seizures with none missed and whilst talking to Tom’s consultants and other Epilepsy professionals and parents, it was very clear that a lot of other people were interested in having an alarm system that seemed to be as accurate as it was, so they decided to set up Adris Technologies (a family run business) to develop and market the system so that others can benefit from this technology.

We are due to launch to the UK public on 22nd September 2014, for more information, visit www.Adristechnologies.com. There is also a Kickstarter campaign set up to get Pulseguard to the United States. You can support this campaign here: https://www.kickstarter.com/projects/1182251268/pulseguard-pioneering-heart-rate-monitoring-system?ref=email

Advertisements

2 comments

  1. Hello there…My name is Paulette Le Pore Motzko who was diagnosed with complex partial & simple partial epilepsy January 1971. Since then I have been a spokesperson for people with disabilities and the Director of The Epilepsy Foundation & The Epilepsy Connection that I was the founder of, in Orange County, CA.
    I would like to work with you to dispel myths and show a person with seizures can still lead a fulfilling life.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s